5 of the Toughest and Most Helpful Lessons I've Learned Because of Chronic Illness

I was diagnosed with idiopathic intracranial hypertension in late 2014, and I spent most of 2015 chasing my tail. I tried all the medications possible for the second time around and still had no luck, leaving me with only one option: a shunt. It was mentally the hardest year of my life so far, but it also taught me some of the toughest and most helpful lessons I’ll ever learn. That’s why I want to share them with you.

1. It’s not selfish to put yourself first.

Like so many people, I spent most of my life looking after those around me. In my need to feel like I had a purpose in life, I put many others before myself and got frustrated when the help wasn’t returned. In 2015, I learned to put myself first and know it wasOK. It was a difficult lesson to learn. Along with being in the hospital roughly every couple of months, I also watched both my parents go into the hospital, fight depression and slowly come around to the idea that they were getting older and couldn’t do the things they used to. Throughout it all, all I could really do was watch. I could barely look after myself, let alone them like I was so used to while I was growing up.

2. Life isn’t over because it didn’t go to plan.

After losing my job, I was a wreck. I’d worked my a** off and climbed every mountain life threw in my way to make it through college and university and make sure I’d be able to have a job that paid well and, most importantly, I’d enjoy. After a lot of hard work, I made it through it all and got the job of my dreams, the start of my career — and then I became too ill to work. It took a long time to rebuild my confidence and eventually find my purpose in writing, sharing my experiences and hopefully helping people, and to realize my life wasn’t over. My hard work hadn’t gone to waste — life just had a different plan for my skills.

When I was first diagnosed, all I could think was “Why me?” and “I don’t think I can handle any more.” I’d been through more than some had in a lifetime, and now I had a lifelong condition with no cure? While asking questions and feeling completely lost can all be a part of dealing with a chronic illness, it didn’t really achieve anything for me. I realize I had to go through that process as part of mourning the life I’d lost, but it wasted so much time. I slowly learned to live in the moment and not pre-judge or question everything. In doing so, I was able to accept the pain, rest when I needed to and then enjoy the small things I was slowly able to do.

4. It’s OK to not fit into society’s “norms.”

We can often feel guilty for feeling poorly or in pain, because society expects us to be working. So many times I had friends ask me if I was looking for a new job, not understanding that most days I was unable to make it out of bed, or that I just didn’t have the ability to work because the constant pain stole so much energy. For a long time I suffered from anxiety when telling people I was on benefits, because it seemed being on them brought some kind of bad reputation. Eventually, though, I’d had enough. I didn’t choose to be this way. I didn’t choose not to be able to work. I can’t choose if some days I can’t make it out of bed because I’m in so much pain. So why should I feel guilty? And why should I let society make me feel guilty?

5. I can still find reasons to be thankful.

Growing up, I strongly believed there was a reason for everything — until I became sick and wondered “Why me?” I worked so hard all my life and I’d never been in trouble. What had I done to deserve this? Why couldn’t someone who’s done horrible things have this? Why can’t they suffer and not me? It’s a brutal thought, but it was true until I began to learn these lessons — lessons I might not have learned if I hadn’t become ill. Eventually, I became thankful for the condition I have — not for the pain it brings, but for allowing me to meet so many incredible people who are also fighting, for making me stronger than I could ever have imagined, and for showing me I needed to slow down and take care of myself.

I’m still not and will never be perfect. Life is a constant lesson, and no matter the pain, I hope to keep learning.

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Nicole Gore was diagnosed with idiopathic intracranial hypertension in July 2014 after her first lumbar puntcure showed her opening intracrial pressure to be 50 (normal is 15 to 20). She lost her job, nearly became homeless and nearly lost an eight-year relationship with the love of her life. This condition turned her life upside-down, but eventually she came out the other end. She shares her experience as a Spoonie with a lifelong, incurable chronic condition in the hopes of helping others who suffer. Since she was diagnosed she has had 10 lumbar punctures and is pending shunt surgery because none of the medication is helping bring down her pressure, which builds to an unbearable amount of pain around every two months. Every day brings a new challenge, but she is staying strong and supporting as many others as she can.